I feel so sorry for you sweetheart, what an absolute nightmare! If it's any consolation to you, this will stop, menstrual migraines do.
I'm completely familiar with all you've tried and the neurologist has done what neurologists do. Beta-blockers are used very successfully to manage the severity and frequency of migraine, as is Amitriptyline, which they know has an affect on serotonin, which is considered to play a part in the migraine process. Gabapentin is also very commonly prescribed to treat migraine along with other anticonvulsants: I tried Topiramate. Interestingly, dizziness, lightheadedness, tiredness drowsiness, blurred vision, coordination problems, frequent urination, urinary retention and cystitis are known side effects of Gabapentin. Could this therefore account for your bladder discomfort and spaced out feeling? As far as I know all of the anticonvulsants have wide ranging side effects, which can be more difficult to handle than the symptoms they are treating but saying that, we are all different. I reacted very violently to Topiramate but there is another member on this site (it might be Rockhopper??) who uses it successfully. Incidentally, Topiramate caused me hair loss.
Let's talk about how migraines manifest themselves. Pure menstrual migraine are classified as only occurring between -2 +3 days of a menstrual cycle and at no other time, these are apparently the most difficult to treat, they are usually without aura. Menstrual migraines are those triggered hormonally at any time of the cycle. I started with pure menstrual migraine at the start of peri but they gradually morphed, as migraines tend to do and started occurring at every change in hormone level. You have talked about how your migraines differ, how they evolve. Menstrual migraines have a terrible tendency to rebound i.e. they respond to meds or just naturally diminish but then leap in again and start to build. This could be what is happening to you.
Again you mentioned that you don't get the classic pulsing pain that is so commonly used to describe migraine. I think our responses to migraines are all very individual. I've never had one-sided pain, which is very much the norm: my pain is crushing everywhere. Your description of the changes in each migraine very much fit the description of how the migraine moves through its stages. Do you know about the stages of prodrome, aura, headache, resolution and postdrome? I will attach some links at the end. What you have described about how your migraines change exactly fits the stage transition. As far as not being trapped in a darkened room, that is something to be eternally thankful for despite the rubbish you are going through. Are you light sensitive though, do you feel more comfortable being away from direct sunlight or bright flashing light?
As far as triggers are concerned, it can be hugely difficult to identify them, especially if your main trigger is hormone change. This is where your diary is worth its weight in gold. We are all very different and triggers are very individual. The ones we so commonly hear about chocolate, cheese, caffeine don't apply to everyone. I have never reacted to any food but I don't drink alcohol. Just also to mention that migraines make us crave certain foods, often carbs or something sweet and then people mistakenly conclude that it is those foods that are the trigger. Keep that diary, record everything, it's invaluable! Another thing, migraineurs have to be creatures of habit. You have to go to bed and rise at regular hours. Too little sleep can trigger one, as can too much sleep. Regular meal times need to be set, a missed meal can trigger a migraine as well as not drinking regularly. Sometimes it can take a number of triggers to finally trigger the migraine therefore; you rise early to catch a flight, the airport is noisy and over bright, you don't eat breakfast at the time you would usually, you become dehydrated on the plane. It's often a combination of triggers that push you over the edge. The difficulty of menstrual migraine is that that trigger is sitting there waiting to bite you on the a—e almost constantly!! Triggers can't always be seen, strong smells can do it, flowers, perfume, heavily scented shampoos, smoke, pollution fumes, tree pollens. High pressure is a common trigger and changes in weather can create havoc for migraineurs.
OK, so much information, let's see if I can get it into some semblance of order.
I think the most important thing for you to do, starting immediately, is to keep a really detailed diary. You mentioned you tried doing this between Jan and Apr but couldn't see any patterns but you then mentioned that last month's worst days were 14/15 and then 20/21. There is a pattern here, oestrogen is at its height on day 13 and then immediately starts to fall: there is another rise in oestrogen at day 21/22 before it falls away again. Equally, progesterone starts to rise dramatically on day 14/15 reaching its peak on about day 21/22. Given that you thrived for many years with the cbc pill and then the mini pill, it seems possible to me that you may be someone who will do well with some form of HRT to control the migraine BUT you need to build a clear picture of what is happening first in order to give the docs a tool to work with. HRT was a disaster for me but I could never take any form of contraceptive pill, however HRT is used regularly to treat menstrual migraine and don't be told otherwise. You do need to see a specialist who is familiar with this though. What region of the country are you in? Perhaps post on here a request for recommendations in your neck of the woods.
Start a detailed daily diary. Include any symptom including visible hormonal changes; cervical mucus changes (are you aware of the normal changes in mucus in a reproductive cycle if not ask me? Cervical mucus tells us so much), breast swelling and pain, mood changes, headaches, dizziness, nausea. Include any events like lack of sleep, late nights, early or late rising, sudden weather changes, too much alcohol etc. Don't spend all day every day doing this but you'll become speedy at recording the info. This exercise is really the most important thing you can do for yourself at this moment.
I tried loads and loads of acute and prophylactic meds and the only two things that have helped me are Frovatriptan and Diclofenac suppositories. None of the other Triptans worked for me. Frovatripan is recognised as the best acute treatment for menstrual migraine, which have the habit of rebounding. It can take a while to work, needs to be taken as early as possible after the headache pain starts but it has a long half-life so lasts longer preventing a rebound. The Diclofenac suppositories bypass the gut, which is in stasis in migraine preventing absorption, and are swiftly absorbed and work fast. So, at the very beginning of migraine headache, take a Frovatriptan and insert a Diclofenac suppository and sit back quietly and allow them to do their thing. Never run around when in migraine especially at the start. If you can abort them early you stand a chance that they won't rebound. Obviously I'm not a doctor or your doctor Mav, you need to discuss this with your specialists but Profs MacGregor and Goadsby recommend this. Triptans can't be taken if you have high blood pressure and can only be taken so many days a month but if you can stop the rebounds by medicating efficiently it may reduce the frequency and intensity for you.
Blimey, sorry, this is a bit of a tome! Everything I have discovered is through personal experience, through consulting with specialists and endless reading and researching but as I say I am not an expert. Read as much as you can and always prepare yourself with backed up information when presenting with a specialist. Do not under any circumstances be persuaded to have ovarian surgery without proper research, speak to me if it's suggested and I'll point you in the right direction.
I'm going to attach a link to the Migraine Trust. It's an excellent source of migraine info and if you are not aware of it I would definitely recommend a read. One of the best things we can do for ourselves is to understand what is happening because whilst we may not be able to do very much, it creates less anxiety as we feel more in control.
https://www.migrainetrust.orgGood luck Mav, I hope this was of some use. Do please ask anything at all you need to. xx
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Topic: Is this Peri? + Chronic Migraine - am in despair.... (Read 8574 times)